An “Aspie” with Type 1 (wrongfully diagnosed as Type 2 for 1.5 years prior):

[AspieGirl88]

Hi. Sorry if I’m a bit shy (I have Aspergers Syndrome, among many other things). So, about my diabetes ... I made some bad choices when I was younger & due to this, they more or less slapped me with a Type 2 diagnosis (& they didn’t even TRY to explore the possibility that I might NOT be Type 2). For 1 & a half years, people were constantly telling me that I brought it upon myself & that I’d see an improvement if I made better choices of food (big LOL) ... I was on a diet of porridge, smoked salmon & plain rice! I am unable to eat fruit & veg like other people; as I had a dental clearance in my 20’s (we couldn’t afford implants & my palate is too flat for dentures), plus I have an ileostomy, after they had to remove my entire large bowel ... & I’m fairly certain that my stomach acid doesn’t break down foods like it should, as I often pass stuff that hasn’t broken down at all. I’ve eaten far healthier than most people, though. Then my blood glucose levels were going WAY out of control & they had to start me on insulin, but not before trying me with one last tablet. I took it like they told me to & it wasn’t long before I was vomiting violently; turned out they had overdosed me & I was being given 3 times the dose I should’ve had (my mum was so piššed with them, because I could’ve died). In the end, they couldn’t keep me on the tablet & they finally agreed that I needed insulin. We’ve been forced to keep putting up the dose, which doesn’t seem to be working (I guess I’m insulin resistant, IDK) ... I was getting so frustrated every time they demanded to know “what had I eaten to make it go up”, especially because I was getting high readings whilst I slept very late at night/very early hours of the morning; & I certainly wasn’t eating anything then! Thank goodness for my previous hospital stay, where they tested me & the head doctor finally told me that I’d been wrongfully diagnosed & that I’m actually Type 1. This apparently happens a lot, especially to people who don’t get symptoms until they reach adulthood. I asked him if they could double check & they did; he said I’m definitely Type 1. I finally feel justified in telling people that my rising glucose levels are NOT something I’ve done to myself! I only have to sleep & they will rise up very rapidly! Also, I ensure my foods are as sugar-free & low-carb as possible, plus I’d drink a lot of Pepsi-Max (with the approval of the diabetic nurse at my local hospital, of course) as well as bottles of water. I’m currently using a Freestyle Libre; which they said they could buy for us but they never did & my mum had to scrape every penny to buy one that cost over £100. Since then, they’ve tried to boss me around & told me I can only take readings 4 times daily (but since WE were the ones who paid for it, I think I’ve the right to take readings as much as I feel necessary; & tough poop if they don’t like that, as I’m autistic with anxiety issues & I need the reassurance that the readings give me). They’re still putting my insulin up, as my bloods have been as high as 26.4mmol (& they are getting higher every day). I’m so scared of eventually slipping into a coma, as I was once in a coma for 5 weeks (due to sepsis) & it was such a frightening experience that I still suffer PTSD because of it. So ... that’s my story so far. Apologies if I’ve made this too long. Me being a born writer, I can’t help myself sometimes. =o)

 

[Ralph-YK]

Welcome to the forum AG. I'm sorry you've had such a difficult time. And having multiple issues probably makes it harder for you.

which they said they could buy for us but they never did & my mum had to scrape every penny to buy one that cost over £100. Since then, they’ve tried to boss me around & told me I can only take readings 4 times daily (but since WE were the ones who paid for it, I think I’ve the right to take readings as much as I feel necessary; & tough poop if they don’t like that, as I’m autistic with anxiety issues & I need the reassurance that the readings give me).

Is this your GP practice or the hospital? Are you getting test strips pescribed? If it's GP practice, I've heard that sometimes the hospital diabetes team can be more helpful. Which are you under for you diabetes management? Hospital or GP practice?
Some T1's on here sometimes will use a lot more than 4.

 

[SB2015]

Hi @AspieGirl88 and welcome to the forum

I am using a Libre but still use over four strips a day. I use them each time I eat, and still check before driving if in any doubt. Those along with ones if I feel hypo add up during the day. If you are in the care of the hospital you could ask your DSN to write to the Practice about increasing the number of test strips. I know they expect the number to reduce when we are using the Libre but they are still needed.

With my Libre I swipe any number of times. Once you have a sensor in , why not. It gives reassurance and helps us to head off yo-yos and hypers. I definitely swipe more than I used to test and keep a much better hold on things.

I self funded to start with but then looked at the NICE guidelines and gathered evidence of the impact that the Libre had in my diabetes and asked it to be funded. This was successful. Well worth a try.

Keep in touch and fire away with any questions that you have.

 

[AspieGirl88]

Welcome to the forum AG. I'm sorry you've had such a difficult time. And having multiple issues probably makes it harder for you.

Is this your GP practice or the hospital? Are you getting test strips pescribed? If it's GP practice, I've heard that sometimes the hospital diabetes team can be more helpful. Which are you under for you diabetes management? Hospital or GP practice?
Some T1's on here sometimes will use a lot more than 4.

My local hospital, actually. I’ve had more than my fair share of trouble with them on so many occasions, it’s quite ridiculous. Their A&E department is actually responsible for my near-death in December 2013, when they sent me home & said my abdominal pains were “just constipation” (which they’d done many times before); even though the urine sample they had to take by catheter was black. Turned out to be sepsis. My large bowel then ruptured & I was on life support 24 hours later. I’ve also been manhandled by their ward nurses whilst trying to recover from critical illness (they tried to forcibly drag me onto a commode in order to change my clothing, which would’ve been very torturous on my surgical wounds). But, I digress. As for strips (for the finger-prick); the hospital staff said they’re not needed any more, as you just scan the Libre device that goes into your arm for 2 weeks each time. I do have a GP, but he is currently handling the virus elsewhere, so he’s not available (which is a pity, because he specialises in diabetes as far as I know). The frustrating thing is; the nurses at my local hospital seem to think they know better than the head doctor who gave me the Type 1 diagnosis & when they think I’m out of earshot, they tell my mum that “in their opinion” I do have type 2! Makes me want to scream, because they ask me if I’m binge-eating through the night & when I react in absolute shock, insisting that I do nothing of the sort; I can see it in their expression that they don’t believe me! I’ve told my mum how much I hate this & she said it doesn’t matter what they think, because we know what’s right. I’ll be glad when the medical negligence court case is settled (we’ve been going through a lot of legal stuff since 2014). Maybe I’ll be able to find health professionals that will actually listen & treat me like a human being, who knows. Until then, we just have to endure whatever c**p they try to dish out. The nurse that came today, insisted on seeing if I inject properly (there are no bumps/bruises & the needle goes straight in every time, so nothing out of the ordinary). She wanted me to use my finger-prick test as well, but I had to tell her that we were denied a new prescription for those strips due to me getting the Freestyle Libre. She more or less just said “well, order them again” (because that totally helps me, LOL). When I asked what to do if the two results were different (& which would be the most reliable), she said the finger-prick was more reliable. I didn’t want to be rude, but I was screaming in my head “Then WHY did we have to fork out £100+ to buy something less reliable?!”, especially since we barely have enough to get by as it is. Sometimes I think I make more sense than they do. XD

 

[SB2015]

There will be differences between the Libre and BG readings as they are measuring two different things. The Libre is taking the glucose level in the interstitial fluid in your arm, the BG is measuring glucose in the blood. I reckon that my Libre is about 10 minutes behind if I want to think of a comparison.

I find that if I look at the Libre reading along with directional arrow I can Make good use of it to head off a hypo or a hyper, by making corrections or eating a Jelly Baby or two.

Where I had the number of strips reduced at one point I just ordered them again when I got to my last pot. They soon saw that I needed more than they had allowed each month and bumped it back up again. I still just order as I need to but they give me 250 at a time.

I would not want to be without my Libre now. I use it for the instant results with the arrows but more than anything I use it to show me the patterns in my results. It has helped me to sort out certain foods that really cause spikes for me (whereas other people will find that food is fine for them) and also helped me to work out an appropriate timing for my Bolus insulin doses.

It is also excellent for me when I am exercising. It is so easy to swipe and is far less of an interruption than having to get out my BG meter.

As a result of all that it helped me to reduce my HbA1c

I hope that you can get the issues around strips sorted out and find the Libre useful.

 

[AspieGirl88]

Hi @AspieGirl88 and welcome to the forum

I am using a Libre but still use over four strips a day. I use them each time I eat, and still check before driving if in any doubt. Those along with ones if I feel hypo add up during the day. If you are in the care of the hospital you could ask your DSN to write to the Practice about increasing the number of test strips. I know they expect the number to reduce when we are using the Libre but they are still needed.

With my Libre I swipe any number of times. Once you have a sensor in , why not. It gives reassurance and helps us to head off yo-yos and hypers. I definitely swipe more than I used to test and keep a much better hold on things.

I self funded to start with but then looked at the NICE guidelines and gathered evidence of the impact that the Libre had in my diabetes and asked it to be funded. This was successful. Well worth a try.

Keep in touch and fire away with any questions that you have.

Hi. Thanks so much for your reply. I’m not sure if there are different types of Libre devices, but because you just scan, whoever handles my prescriptions decided that I didn’t need the Accu-Chek Performa strips any more (once they found out I was on the Libre). Even though the nurse today has said to just order more Accu-Chek strips; that’s not going to be easy, as they aren’t always on the same page (if you know what I mean). I don’t know much about funding, as my mum & older sisters handle that type of thing, due to my autism. I think my mum did ask if she could get credit back or something, but whoever she was on the phone to was being quite rude & when they told my mum she should’ve waited (for our hospital to actually do something), my mum got a bit narked & said she couldn’t just sit by & watch as I got worse ... then they hung up. I honestly wish I was having hypos instead of hypers, as you can just have something with glucose to bring it up. Unluckily, I seem to have the worst kind of hyperglycaemia; where you can inject insulin, drink huge amounts of sugar-free liquids & even trying to go without eating ... it still doesn’t bring it down! I’m in luck, though. In about a months time, I have to go through a very special kind of scan (my mum says they had to send the dye over from England just to do it), where they inject me with dye the first day, send me home, then I come back for the scan. Originally, this is to see what’s happened since I became ill with sepsis (which is required before the settlement), but I might just ask them to have a look at my pancreas anyway. Surely that seems reasonable enough, while they can? It might just give me the proof I need to show that I’m definitely not type 2. After all, if it’s a choice between the opinion of a district nurse & the word of a head doctor (from a much bigger & better hospital), I think I’d believe the credentials of the head doctor who had already double-checked the results. Apologies for rambling, BTW. I’m a bit up & down today & I can’t seem to shut up! LOL. =o)

 

[AspieGirl88]

There will be differences between the Libre and BG readings as they are measuring two different things. The Libre is taking the glucose level in the interstitial fluid in your arm, the BG is measuring glucose in the blood. I reckon that my Libre is about 10 minutes behind if I want to think of a comparison.

I find that if I look at the Libre reading along with directional arrow I can Make good use of it to head off a hypo or a hyper, by making corrections or eating a Jelly Baby or two.

Where I had the number of strips reduced at one point I just ordered them again when I got to my last pot. They soon saw that I needed more than they had allowed each month and bumped it back up again. I still just order as I need to but they give me 250 at a time.

I would not want to be without my Libre now. I use it for the instant results with the arrows but more than anything I use it to show me the patterns in my results. It has helped me to sort out certain foods that really cause spikes for me (whereas other people will find that food is fine for them) and also helped me to work out an appropriate timing for my Bolus insulin doses.

It is also excellent for me when I am exercising. It is so easy to swipe and is far less of an interruption than having to get out my BG meter.

As a result of all that it helped me to reduce my HbA1c

I hope that you can get the issues around strips sorted out and find the Libre useful.

Hi again! Thanks so much for your input. I definitely think the Libre has been the best thing we’ve got so far, yet it seems weird that we were never asked to test with the Accu-Chek (finger-prick) before. I might consider asking my 2nd eldest niece, as she’s in her 3rd year of medical school & working as a student doctor in English hospitals, so she might have some input of her own. As for the timing of my insulin; I get fast-acting before breakfast (8:30-9:00am), lunch (1:30pm) & dinner (4:30-5:00pm), then I get the 24-hour insulin alongside the morning dose. I can’t remember the numbers (apologies), but they are continuously going up. I can’t help wondering sometimes if I should be getting the insulin as I need it (whenever it’s a certain number or higher), as opposed to being on a schedule, regardless if I’m low or high ... just curious if it would work out better that way. Unfortunately, it’s literally impossible to cut all carbs from my meals, or else I’d pretty-much be on a carnivorous diet (with perhaps some dairy thrown in). I’m repulsed by eggs, as I regularly get “sulphur burps” & it’s always worse if I try to eat eggs. I also can’t really have liquid foods, because of my ileostomy (it will legit give me “the runs” really bad for 48 hours, even if it’s just one bowl of soup). I don’t eat bread that often; maybe a toasted sandwich once in a blue moon or a bit of plain cheese pizza. I’ll usually have a portion of dry cornflakes (washed down with water) & a sugar-free yogurt (frozen) for breakfast. If my blood glucose is low enough, I can have 2 crumpets with butter & jam (no added sugar, spread thinly). Otherwise, I’d have a yogurt & maybe a packet of ham pieces (or smoked salmon). Dinner time; I’d have tinned potatoes with butter & maybe a couple of plain burgers cut into pieces (with a frozen yogurt for “dessert”). That’s a typical day for me. I can’t really “exercise”, because I’m also an amputee (lower right leg, due to recurring sepsis). I was due to go into a physio ward just as the lockdown happened (where I would’ve had a lot of weeks intense physio & then they would’ve moved onto the fitting of my first prosthetic), so I’ve sadly not made much progress. I’ve been doing some of my own little stretches on my bed, just to keep my joints from stiffening up. I’d really love to do some hydrotherapy, though, as it would help with circulation & hopefully build muscle that has been wasting. My mum recently got a blowup hydrotherapy pool for our back yard (inside our storage shed), so I might get my older sister to help me in there. If anything, it might even help me relax or get a good sleep for once. Fingers crossed, anyway. I’d better cut this short, as I’ll need to have my dinner! Again, apologies for blabbing on, LOL. =o)

 

[everydayupsanddowns]

Welcome to the forum @AspieGirl88

I am sad to hear about your diagnosis, and the problems you have had. And also your amputation.

You certainly seem to have had a difficult time, and I am sorry about that.

I wonder if it might help for you to collect some information while you are considering what to do to improve your BG readings? Like a food diary and doses alongside your BG reading?

You haven’t mentioned much about your ‘background’ insulin, amd whether you have checked to see whether your dose of that is working for you? Your background insulin is supposed to hold you steady, within 1-2mmol/L between meals where you aren‘t eating (see here for a suggestion of how to check this)

I find that if my background insulin isn‘t set right, my other doses don’t work well either, so it might be worth adjusting your background (or asking your Dr or nurse about adjusting it) before you start adjusting your meal doses?

 

[Ralph-YK]

I can see you don't have a good relationship with medical people/hospital. I'm sure this makes it harder for you.
I take it you're under the hospital for your diabetes. Does your GP practice pescribe strips?

Even though the nurse today has said to just order more Accu-Chek strips; that’s not going to be easy, as they aren’t always on the same page (if you know what I mean).

I do.

If you are in the care of the hospital you could ask your DSN to write to the Practice about increasing the number of test strips.

Maybe you could try asking this nurse to help with getting strips.

The frustrating thing is; the nurses at my local hospital seem to think they know better than the head doctor who gave me the Type 1 diagnosis & when they think I’m out of earshot, they tell my mum that “in their opinion” I do have type 2!

Are you able to talk to the doctor about this? They need to be definitive about the diagnoses. And you shouldn't be having people telling you different things.

 

[trophywench]

Where in the world are you situated ?

 

[AspieGirl88]

Welcome to the forum @AspieGirl88

I am sad to hear about your diagnosis, and the problems you have had. And also your amputation.

You certainly seem to have had a difficult time, and I am sorry about that.

I wonder if it might help for you to collect some information while you are considering what to do to improve your BG readings? Like a food diary and doses alongside your BG reading?

You haven’t mentioned much about your ‘background’ insulin, amd whether you have checked to see whether your dose of that is working for you? Your background insulin is supposed to hold you steady, within 1-2mmol/L between meals where you aren‘t eating (see here for a suggestion of how to check this)

I find that if my background insulin isn‘t set right, my other doses don’t work well either, so it might be worth adjusting your background (or asking your Dr or nurse about adjusting it) before you start adjusting your meal doses?

Hi. Thank you for your post (& apologies for not replying sooner). Don’t feel too bad about the amputation, as it was able to set me free from my previous condition CRPS (aka “Complex Regional Pain Syndrome“), which I suffered horribly from 2009-2019. I’m unfortunately not able to give much more info on my insulin doses. You see; I’m autistic & have memory problems, along with dyspraxia (plus anything involving numbers is very complicated for me). My mum & older sisters have to help with my meds, because I can’t memorise what meds or what doses I’m supposed to get; so they also have to prime the syringe for me each time (but I can manage injecting no problem). I’m afraid keeping a food diary isn’t an option for me, because (although my diet is very restricted due to having no teeth, an ileostomy & a weakness in my stomach acid) sometimes I have to suddenly change my meals from one type of food to another, as I often get serious digestive problems. It’s very important that I do this, because I was hospitalised a short time ago with a twist in my bowel & they were considering surgery if it didn’t improve (thankfully it adjusted itself), but surgery for me is very dangerous because the morbidity rate of opening my abdominal cavity could actually kill me ... at least that’s what the surgeon told me, after my large bowel was removed. I have tried to ask about getting doses more frequently (asking if I could take insulin when my blood glucose is up, instead of doing it before mealtimes), but they just got annoyed & insisted that they knew what they were doing. But I don’t think they do, as I haven’t seen a single-digit reading in a very long time. Unfortunately, I find that the nurses we’ve talked to or had visits from are somewhat biased because of bad choices I made in my youth & they refuse to believe that I’m Type 1; even though the head doctor & the nurses of the hospital I stayed in (with my bowel twist) all agreed that I was Type 1 & I did have both the head doctor & one of the ward nurses check again, just in case. The diagnosis was still the same & quite frankly, I’m inclined to believe them over my local hospital. Plus, my blood glucose has been known to rise to the 20’s; even when it’s after midnight & all I’ve been doing is drinking fluids, using the loo, sleeping or using my iPad. So, I know for a fact that it is NOT my diet causing it, despite what the nurses are saying. I’m sorry for some of the nicer staff that work at my local hospital, but it doesn’t change the fact that my local hospital is still the worst I’ve ever been to. I wouldn’t have my ileostomy now, if they had chosen to look into my abdominal pains & bowel problems (by doing a colonoscopy at the very least); but every time I came to A&E legit crying/screaming in pain, I was sent home again with paracetamol & Laxoberal. It might work for some, but I once downed a whole bottle of Laxoberal from sheer desperation & even then, all I got was more blood & pain. I wish I’d been able to see the looks on their faces that fateful December 2013, when the ambulance wheeled me in & I was in septic shock, barely clinging to life (after they’d done their usual “it’s just constipation“ routine). You’d think they’d learn from the first time to listen to the patient; considering that we’re going through a medical negligence court case, due to them not listening! LOL. Sorry for going off topic a bit, but I get a bit tired of them ignoring everything I have to say (& then becoming more ill because they didn’t listen to a single word I said). Even this morning, I didn’t fully finish my breakfast (dry cereal washed down with water & a sugar-free frozen yogurt) & my blood glucose was about 13mmol, which makes a change. But even after the insulin & not finishing breakfast, plus using the loo beforehand; it still went up to 14mmol (maybe a bit higher, I can’t quite remember). They’ll have to admit to me being Type 1 sooner or later. Otherwise, when my court case is settled; I’ll be changing to a more understanding team of doctors/nurses. What makes me more angry is that they could be doing the same thing to someone far more vulnerable than me (because at least I have my family to speak up on my behalf). Going off topic again, though. Sorry. Feeling a bit lethargic, TBH. Probably due to my insomnia keeping me awake for the past 2-3 days. Hope you don’t mind if I cut this here? I think I’ve covered everything that I needed to (my bad if I’ve missed anything). I probably have to reply to someone else, but I think that will have to wait for a little while, as I feel the need to put my head down for a bit. If I don’t reply to a post right away, that’s probably why. Apologies for making this so long!

 

[Deleted member 27171]

Hi @AspieGirl88
Nice to have you on the forum 🙂. Don‘t worry about how long you take to respond, we’re all here different amounts of time and different times of day, some more so than others, not everyone replies very quickly.
You’ve really been through it! You must be feeling pretty rotten with levels so high for such a lot of the time, sorry it’s taking so long to get your diabetes treatment right. Getting an accurate diagnosis is definitely a step in the right direction.
The reason the nurses don‘t want to just inject in response to high levels is that you would probably have high levels most of the time with that approach. Insulin treatments are designed to prevent levels rising. Yes, you can also take corrections for the times when something causes a less expected high level, but it’s not an effective way to manage things all of the time.
I wonder if your other digestive conditions are having an impact on how your levels respond after food? I don‘t know if they are, but your nurses should know if this is the case.

 

[Ditto]

Hello and welcome to the forum. Your story is horrific. I think I'm Aspergers too. I asked to be tested and they put me down on a waiting list ten or twenty years ago, I'm still waiting. 🙂 I agree with you on the numbers thing, very difficult to deal with.